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Burning Mouth Syndrome – My Tongue is a Star

NOTE: Although this post will remain on Kali’s OQM Musings, it has been reproduced and future BMS posts will appear on A Burning Journey. Please check it out if you are interested in more about Burning Mouth Syndrome.

I told you recently in “The Patient Maze,” that I was filming a video interview about Burning Mouth Syndrome last month, and it is hitting the air waves now.

Many thanks to Charlene Bert and her crew from NPN Media who did a great job and were very sensitive and caring during the process.

Chicago’s CBS Channel 2 coverage was the first I saw and that link is no longer active. There is a subsequent story (January 2014) that ran in Southern California on ABC and another from CBS Miami, and News 4 in Georgia. More recently (February 2014), 19 Action News in Ohio picked up the story and in June, 2014 it appeared in Boston. In December 2014, it resurfaced in Milwaukee. There is one statement in the videos that is not complete. Nerve damage is not actually ruled out in BMS. I have had three diagnostic nerve blocks that failed to relieve my pain, but the specialist informed me that there are many hair-like nerve fibers in the mouth and tongue and there is no way to block them. So, if your BMS is possibly related to dental procedures, as I suspect mine is, there is no way to truly “rule nerve damage out.”

I am not thrilled with my appearance in the video. It is obvious this syndrome has added stress, age and weight to me over the past few years as I cope with it. I know from reading posts from my fellow sufferers on the Facebook Burning Mouth Syndrome (BMS) support group that I am not alone in this. We often only derive complete relief (for a limited time) from eating or drinking and the only long-term relief occurs when we sleep. We take medicines that make us tired and drowsy and often we are affected by varying levels of depression as we realize that this is not going away, we may never know what caused it, and there is no cure.

It is truly a sentence without an end date.

I know that everyone who suffers from chronic pain goes through stages of grief and coping strategies. We are certainly not alone, but that is how it feels at times when family and friends assume your pain is gone because you look fine, are functioning, and are getting on with your life. As I have said before in BMS and Me, “We stop talking about it because there is nothing new to say.”

So, how can you as a friend or family member help?

Just check in every once in a while and ask us how we are doing and then don’t be satisfied with a “Fine,” or “Same-O, Same-O” response. Get us to talk a little about it and truly listen. It will help us to relieve the stress because there is great comfort in being heard and understood. We never expect you to “know how we feel.” That would be impossible. But listening, or holding space with and for us will truly help. There may be tears, and those are a good thing, because they also relieve stress.

There will be times when we withdraw; when talking and smiling and keeping it going is simply too hard. And if you give us a little space and don’t make us feel guilty about it, we will come back. Sometimes we just need a rest.

Perhaps one lovely day we will go into remission.

Celebrate with us, but know that in the back of our minds, and for the rest of our lives, we will always be fearful that this is not the end of our burning journey. This is not paranoia, hypochondria or even negative thinking. It is simply our reality, as it is the reality for any other chronic disease sufferer who experiences remission. Listen, give us a hug, and let us find our coping strategies. Don’t try to fix us, because quite frankly, you can’t.

A wonderful thing I have learned through this experience is that it makes me much more likely to cut others slack when they are surly, withdrawn or simply never return my smile. Who knows, they could be in as much or more pain than me, and less able to cope that particular day. It does change your perspective.

Kali, this was so beautifully written, and more importantly, how poignant your message! You manage all of this with such dignity. It’s true, even those of us in your life in consistent ways, have to remind ourselves that you are suffering. Thank you for sharing and for teaching me an important lesson about supporting you and others coping so courageously.

Shirley,
I have seen more current articles that say 2-5%. Why the discrepancy? Different sources, possibly, but also the aging of our population and the 50-70 average age range combine to make more people affected.
Prayers are good, and so is support. If you haven’t checked out the Facebook Burning Mouth Support (BMS) group, please do. It isn’t perfect, but I have a feeling that if something effective is found, it will be talked about here! Wishing you well in your BMS journey.
Kali’

Thanks Kalipr. It is nice to know that someone is always listening. My daughter, last night, gives me the hum, hum, which tells me she has heard it all before and is not listening. I do not blame her one bit.

Shirley,
Invisible, chronic pain is difficult to express and particularly difficult for other people to imagine. As I have expressed other places in this blog, I turned to a professional therapist for awhile, not only because I felt she might have insights into ways I could better control my chronic pain, but also because I needed someone to vent to. Someone who did not love me and felt no need to fix me. Someone who would not feel inadequate when they could not think of something comforting to say. Someone I could rage to if I need to, and know that I was not inflicting a lifelong scar on a close relationship I valued. It was very helpful, and if you can manage it, I highly recommend it. Will it cure your BMS? Not likely. Will it make you feel better because you are truly heard with no judgment? Yes, indeed. Good luck, and I hope you find someone who can be that listening ear for you.
Kali’

Kali, I am glad you posted this because I honestly forgot you were afflicted with such a horrible condition… You are strong and a great influence on others in the country and, I assume, the world, who are dealing with such an affliction… The rest of us, me included, can only hope and pray a cure will be forthcoming.
Peace dear friend. Eloise (Linehan Como) Brown.